Autism in Adults

National Institutes of Mental Health

Living Arrangements for the Adult with an Autism Spectrum Disorder

Independent living. Some adults with ASD are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances or dealing with the government agencies that provide services to persons with disabilities. This assistance can be provided by family, a professional agency, or another type of provider.

Living at home. Government funds are available for families that choose to have their adult child with ASD live at home. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid waivers, and others. Information about these programs is available from the Social Security Administration (SSA). An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible.

Foster homes and skill-development homes. Some families open their homes to provide long-term care to unrelated adults with disabilities. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a“skill-developmen” home.

Supervised group living. Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Higher functioning persons may be able to live in a home or apartment where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.

Long-term care facilities. This alternative is available for those with ASD who need intensive, constant supervision.

Adults With Autism

Individuals with an Autism Spectrum Disorder (ASD) exhibit common problems with communication and social behavior. This causes difficulties in many areas of life. While it is the public school’s responsibility for providing services until the person with an ASD reaches the age of 22 years, in severe cases a person with an ASD will need full-time residential care for life. The consumer and their family is then left to face the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as programs and facilities that will support these goals. A nurturing environment at home, at school, and at work, helps a person with an ASD continue to learn and develop throughout their lives. Some adults with an ASD (especially those with high-functioning autism or Asperger syndrome) are able to work successfully in mainstream jobs. Many others with ASDs are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities.

Autistic Life

Compared to the general population, fewer adults with an ASD marry or have children or live in a metropolitan area. This trend is changing as more diagnosed adults are forming relationships with others on the autistic spectrum. This autistic culture, as it is referred to, is based on an accepting belief that autism is a unique way of being and not a disorder to be cured. People with ASDs are often attracted to others with the disorder because they share interests or obsessions and the compatibility of personality types. Many people living with an ASD have expressed the importance of companionship in their lives as similar to those without an ASD.

Living Arrangements

Some adults with ASDs are capable of independent living: either entirely on their own or semi-independently in their own home or apartment with assistance in solving major problems. This assistance can be provided by family, a professional agency, or another type of provider. For families who choose to have their adult child live at home, government funds are available. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and Medicaid waivers. Information about these programs can be found through the Social Security Administration (SSA). Supervised group living is common among persons with disabilities. These group homes are usually staffed by professionals who help residents with basic needs, including meal preparation, housekeeping, and personal care. Higher-functioning persons may be able to live in a home or apartment where staff visits a few times a week. Institutions, while in less use, remain an alternative and are available for persons with an ASD who need intensive and constant supervision. Facilities offer opportunities for recreation and simple but meaningful work.

Employment

A small percentage of high-functioning adults are able to work successfully in mainstream jobs, although frequently far below their actual level of skills and qualification. Employers should take advantage of the individual's strengths and abilities. In A Parent's Guide to Asperger Syndrome and High-Functioning Autism, the authors describe three employment possibilities: competitive, supported, and secure or sheltered.

Competitive employment is the most independent, with no offered support in the work environment. Some have even managed self-employment. Individuals with Asperger Syndrome may be successful in careers that require focus on details but have limited social interaction with colleagues, such as computer sciences. Supported employment is a system of support that allows individuals to have paid employment within the community, sometimes as part of a mobile crew, or in a job specifically developed for the person. In secure or sheltered employment, an individual is guaranteed a job in a facility-based setting. Individuals in secure settings generally also receive work skills and behavior training.The Internet has often been said to be a good means of communication since it is almost devoid of the non-verbal cues that people with ASDs find hard to socially engage. To locate employment options, begin by contacting agencies that may be of help, such as state employment offices, social services offices, mental health departments, and disability-specific organizations.

Diagnosis as An Adult

Getting a diagnosis for an ASD as an adult is not easy. It can be hard to convince your doctor that a diagnosis is relevant and/or necessary. The typical route for seeking a diagnosis as an adult is to visit your doctor and ask for a referral to a psychiatrist or clinical psychologist. When bringing up the topic with your primary care doctor, make sure that the appointment is set only for this specific reason, as this is an issue that needs everyone’s full attention. Begin by explaining why an ASD is even a concern. People with ASDs will be affected in some way be each of the three categories: social communication, social understanding and flexibility of thought. The spectrum is broad and two people with the condition may exhibit very different severities. No one person will have all the traits but in large most will be affected within these three areas.

Social Communication

Unaware of what is socially appropriate and have difficulty choosing topics to talk about

May not be socially motivated because they find communication difficult

May not have many friends and they may choose not to socialize very much

Social Understanding

Difficulty in group situations

Finding small talk and chatting very difficult

Problems understanding double meanings

Not choosing appropriate topic to talk about

Talking about people say very literally

Flexibility of Thought

An obsession with rigid routines and severe distress if routines are disrupted

Problems making plans for the future, and having difficulties organizing your life

Problems with sequencing tasks

Diagnosis as an adult can lead to a variety of benefits. You can gain a better understanding of yourself. Many people have suffered from mental health problems and/or have been misdiagnosed as having mental health problems such as schizophrenia. A firm diagnosis can be a relief because it allows them to learn about their condition and understand where and why they have difficulties for the first time. Others will also gain a better understanding as it will be easier for them to empathize with your position once they learn there is a reason for your difficulties. It is also helpful to meet others within the community with ASDs by learning about their experiences and sharing your own. Support is a good step in seeking treatment and relieving anxieties, helping to maintain a healthier lifestyle while dealing with this disorder.